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The child with special health care needs

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  • 1. The Child with Special HealthCare Needs Andre Sookdar Class of 2013
  • 2. Objectives• Child with Special Health Needs• Medical Home• Role of the Family Physician
  • 3. Definition• Children with Special Care Needs are “those who have or are at increased risk for a chronic physical, developmental, behavioural, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” (Federal Maternal and Child Health Bureau)
  • 4. Definition• Disabilities – Cerebral Palsy• Severe Chronic Illness – Type 1 DM• Congenital Defects – Cleft Palate• Health-related and Behavioural problems – Learning Disorders or ADHD
  • 5. Definition• Impairment – loss or abnormality of normal physiology or anatomy, e.g. long eyeball• Disability – restriction or loss of ability to perform normal actions e.g. myopia• Handicap – disadvantage for an individual, arising from a disability
  • 6. Medical Model of Disability• Introduced by WHO in 1980• Identifying the disability from a clinical perspective• Understand and control or alter the course• Cure disabilities medically, to improve function and to allow disabled persons a more “normal” life
  • 7. Medical Model of Disability
  • 8. Social Model of Disability• Reaction to the medical model• Identifying barriers, negative attitudes and societal exclusion of the disabled• Society fails to take into account of persons’ differences
  • 9. Social Model of Disability
  • 10. Statistics• Trinidad and Tobago (UNESCO1995) 17,950 children (10%) in primary school with Special Health Needs; 1795 with profound illness.• Economic Commission for Latin America and the Caribbean 2000• 0-4 y 0.7% Male 0.6% Female 5-19 y 1.7% Male 1.4% Female
  • 11. StatisticsAges Total Mental Sight Hearing U Limbs L Limbs % % % % % %0 to 4 0.6 0.1 0.1 0 0 0.15 to 19 1.6 0.5 0.4 0.2 0.1 0.2
  • 12. Special Health Care Needs• Adults face a small amount of common chronic diseases (DM, HTN, OA) whereas children face a wide variety or rare illnesses.• Few groups are common (e.g. asthma)• Common pediatric clinic presentations (seizure disorders, CP) are rare in the general population• Alone, isolated if no support
  • 13. Special Health Care Needs• High cost to both health care system and family• Multiple clinics, medication, diets, equipment• Multiple providers may conflict• Conditions can be unpredictableCough: will it dissipate or lead to wheezing in the ER?
  • 14. Special Health Care Needs• Greater dependence on parents and health care providers• Lower rate of immunizations and screening for common health problems• Lack of adequate primary care  greater likelihood for hospitalization and substance abuse
  • 15. Poverty & Health risk• Low Birthweight • Lost school days• Asthma • Severely impaired• Delayed vision Immunizations • Iron def anaemia• Bacterial meningitis• Rheumatic Fever• Lead Poisoning• Diabetic Ketoacidosis
  • 16. History• Parental Concerns• Current level of development and function (Denver)• Temperament
  • 17. Antenatal History• Alcohol• Smoking• Medications• Illegal Drugs• Nutrition• Antenatal care• HIV• TORCH & other infections
  • 18. Perinatal History• Birth weight • Jaundice• Gestational Age • Seizures• Labour difficulties • Ventilation• APGARS• Adverse events (unprepared delivery etc)• RDS
  • 19. Family History• Metabolic disease• Consanguinity• Mental function or special education• Early or unexpected death
  • 20. Social History• Resources ($, social support)• Education• Mental health• High-risk behaviour (drug, sex)• Stressors (marital discord)
  • 21. Other History• Gender• Trauma (head injury)• Infections (meningitis)• Toxic exposure (lead)• Physical growth• Visual, auditory function• Nutrition• Chronic conditions
  • 22. Examination• Observe child at play• Speak gently to the child• Approach with friendly manner• Examine on mother’s lap, floor or wherever the child feels comfortable
  • 23. Examination• Make examination into games• Opportunistic approach• Involve the parent if child still hesitant
  • 24. Examination• Skin• CVS• Abd• GU• Neuro
  • 25. Examination
  • 26. Examination
  • 27. Examination
  • 28. Special Health Care Needs• Early detection• Prevention or limitation of disability• Maximize the child’s potential• Child in the context of the family• Address needs of all members
  • 29. Medical Home• Approach to providing continuous and comprehensive care• Cost-effective, appropriate• Outpatient, inpatient, subspecialty services• Establish family-centered care• Minimize learned helplessness and vulnerable child syndrome
  • 30. Medical Home• Care should be accessible, financially and geographically• Family-centered planning, decision making• Continuous• Physicians facilitate coordination of care and information sharing• Respect and concern for the child• Compassionate and culturally competent
  • 31. Medical Home
  • 32. Transition periods• Discharge from hospital to home• Entry into school life• Adolescence• Adulthood
  • 33. Child’s Understanding• Children need different explanations of their disease as they mature• Ages 4-6 good vs bad• 7-10 differentiate self from external environment• Germ theory and medications fighting illness• May not understand more complicated illnesses
  • 34. Child’s Understanding• 11 plus understanding of human body, organs and functions• Most will ask questions similar to adults
  • 35. Illness’ Effect on Child• Infancy – affects growth and development• Deformity affects child’s response to parents and vice versa• Frequent hospitalizations may burden the family
  • 36. Illness’ Effect on Child• Preschool – delay in autonomy, mobility and self control• Schoolchild – may be subject to teasing and social isolation• Absenteeism  missed social opportunities
  • 37. Illness’ Effect on Child• Adolescence – affects development of independence• Affects body image and causes embarrassment• Frequently test limits of illness and compliance to treatment becomes an issue• Greater shift of care from parent to child
  • 38. Illness’ effect on FamilyStressors – psychological and• Monitoring health social impact on child status • Balancing the child’s• Treatment regimes needs with those of• Lack of information the family• Lack of opportunity to • Lack of time to discuss with oneself professionals • Guilt• Physical,
  • 39. Illness’ effect on Family• Cyclical Grief or Chronic Sorrow
  • 40. Illness’ effect on Family Diagnosis Shock - Disbelief - Denial Problem Saturation Despair - Disability - Guilt Acceptance Normalization Altering the child’s Strengthening child’s environment resourcesMaking Trade- Covering-up Doing normal Desensitizing offs things Sharing Participating in management decisions
  • 41. Illness’ effect on Family• Allow ventilation parenting advice• Facilitate • Suggest clarification interventions• Support patient • Provide follow-up problem-solving • Facilitate• Provide specific appropriate referrals reassurance • Coordinate care and• Provide education interpret reports• Provide specific after referrals
  • 42. Conclusion• Child with Special Health Needs• Medical Home• Role of the Family Physician
  • 43. References• Behrman, Kliegman, Jenson. Nelson Textbook of Pediatrics 17th Ed, Saunders 2004• Aumann K, Britton C. Good Practice in working with parents of disabled children cited Oct 2012 Available from: http://www.parentingacademy.org